iiinova — where your digital self keeps evolving

Reposted by Ror Preston

The Sick Times @thesicktimes.org · 12/03/2025

This week at The Sick Times, @rorpreston.bsky.social shares why he founded CrunchME, a new patient-led organization seeking to compile evidence and accelerate research on ME, Long COVID, and other Infection Associated Chronic Conditions (IACCs). bit.ly/4hvBUrw

Photo of Rory Preston with a black and white filter, in front of a blue background with white strings of code and a design evoking biochemistry diagrams. The text reads, “The Sick Times. Accurate statistics for ME and Long COVID are vital. That’s why I started a patient-led organization to “crunch” the diseases. By Rory Preston.”

Since falling ill with myalgic encephalomyelitis (ME) in 2018, it has frustrated me greatly seeing organizations and especially governments repeating out-of-date statistics related to this disease — minimizing either the apparent number of sufferers (such as the much-repeated 250,000 figure for the number of ME patients in the UK) or our degree of suffering. This knowledge gap has been compounded by the COVID-19 pandemic, which has been shown to significantly increase the number of ME cases. - Rory Preston, Data scientist and founder of CrunchME

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Michiel @murtoz.bsky.social · 30/03/2025

I wanted to call out @rorpreston.bsky.social and his team of volunteers, for their brilliant work in gathering all the facts and figures about #ME/CFS and #LongCovid in one place over at www.crunchme.org If you can afford to, please consider donating: gofund.me/2b3d5185

crunchme.org

CrunchME

The evidence and insight base to crunch infection-associated chronic illnesses.

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CrunchME @crunchme.bsky.social · 07/04/2025

As our Clinical Trials database continues to grow, we will be spotlighting some of the treatments being tested around the world, for Long COVID, ME/CFS & other IACCs 💊 Thank you to @mildtin.bsky.social, our clinical trials lead, for putting these together! A visual thread 🧵 #MECFS #LongCovid

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Ror Preston @rorpreston.bsky.social · 06/03/2025

I have now added some new caps to the Against ME & Co. line up 🧢 We have 'Cure Long Covid' in faded pink and red lettering, and 'Cure POTS' in faded navy and pink lettering If you'd like one, you can get there here 🔗 yewjk2-s6.myshopify.com Thank you for your support! #MECFS #LongCovid #POTS

Pink cap with red text saying 'Cure Long Covid'

Navy cap with pink text saying 'Cure POTS'

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Ror Preston @rorpreston.bsky.social · 18/02/2025

The case for ramping up ME/CFS research, through both public and private funding, is absolutely compelling 📈 Especially in light of the COVID-19 pandemic, which has significantly worsened this humanitarian crisis happening under our noses A visual thread 🧵

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Ror Preston @rorpreston.bsky.social · 18/02/2025

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Ror Preston @rorpreston.bsky.social · 16/02/2025

A comparison of UK Government research funding for ME/CFS compared to other diseases like MS, IBD and Parkinson's 🧐 @nihr.bsky.social and @ukri.org we need ring-fenced funding for ME as part of the Delivery Plan Thank you to @mediumwhite.bsky.social & co. for analysis #MECFS #NHS

Area chart showing ME funding (£6m) vs. MS, IBD and Parkinson's by the UK Government, 2015-20

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Ror Preston @rorpreston.bsky.social · 10/02/2025

New chart from @crunchme.bsky.social showing just how low NIH funding levels for ME/CFS & Long Covid are compared to disease burden 🔍 $14 and $62 per disability adjusted life year (DALY respectively) #MECFS #LongCovid

Bar chart showing the NIH funding level per DALY by disease, with Long Covid and ME/CFS at the bottom

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Ror Preston @rorpreston.bsky.social · 07/02/2025

Cure ME/CFS caps getting out there to help spread awareness + spark conversation 🔥 If you wanna, you can get yours here 👇 yewjk2-s6.myshopify.com #MECFS #LongCovid

Woman wearing black cap saying Cure ME/CFS

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Ror Preston @rorpreston.bsky.social · 04/02/2025

To help fund my work on @crunchme.bsky.social I'm selling 'Cure ME/CFS' caps! If you'd like to buy one, here is the link to my store: yewjk2-s6.myshopify.com Shipping only in the UK for now while I get the ball rolling! Only 5 left of this first batch 👀 #MECFS #LongCovid

Black cap saying 'Cure ME/CFS' on the front, church and people in the background

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Michal Caspi Tal, PhD @immunofever.bsky.social · 02/02/2025

This is such an incredibly critical paper and we need so much more of this #MenstruationScience to better understand #WomensHealth and illness!!! Thanks and congrats to all the authors! @rorpreston.bsky.social

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It's Not All About ME @clairemyfanwy.bsky.social · 02/02/2025

Your yearly reminder of how shockingly low the funding for MECFS research is.

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traceydooley.bsky.social @traceydooley.bsky.social · 01/02/2025

A shameful lack of funding for an illness which studies have shown offers a significantly lower quality of life than people with cancer, multiple sclerosis, heart attack, or stroke. #MECFS #MyagicEncephalomyelitis #MedicalScandal

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Ror Preston @rorpreston.bsky.social · 01/02/2025

This visual shows UK gov funding levels for different diseases over time - analysis by @mediumwhite.bsky.social 💸 It shows how paltry funding for ME has been, especially considering that data from the US suggests the ME disease burden is larger than for the other 3 *combined* 😅 #MECFS #LongCovid

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Ror Preston @rorpreston.bsky.social · 01/02/2025

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Elke Asen @elkeasen.bsky.social · 28/01/2025

To advocates & policymakers in the #IACC space: Please check out this new report on data-driven insights and the case for much more attention on & funding for IACCs such as #MECFS & #LongCovid. Please share widely! So thankful to @mildtin.bsky.social for leading this incredible report 💙

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Reposted by Ror Preston

Ror Preston @rorpreston.bsky.social · 27/01/2025

Very excited to say that @crunchme.bsky.social's first report is out and about 🙌 The Future is a Policy Choice: Addressing Infection-Associated Chronic Conditions Our goal here is to bring together the key info needed to make the case for taking action *now*! drive.google.com/file/d/17fgU...

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Jess Badger @jesshoneybadger.bsky.social · 27/01/2025

I’ll be reading this in its entirely today, @crunchme.bsky.social! Thanks so much! #mecfs #millionsmissing

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Didier @medidier.bsky.social · 27/01/2025

Really great document, policy-oriented. Every slide is comprehensive, up to date, extremely clear in argumentation, great referencing... Hopefully LOTS of MPs, MEPs and policy-makers will have access to it 👏📌 THANK YOU @mildtin.bsky.social via @crunchme.bsky.social & @rorpreston.bsky.social

A screenshot of policy paper by CrunchME, highlighting the written section about how the 21st century is the Biology's Century, stating the many radical advances in Medicine, notably in ailments that were long considered incurable or 'unexplained'.

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Katy B @katybrc.bsky.social · 27/01/2025

Vitally important report from @crunchme.bsky.social on Addressing Infection Associated Chronic Conditions "It brings together much of the key information needed to help bring policymakers up to speed on these conditions - including #LongCovid, #ME/CFS, #POTS"

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Carole Bruce @cabruce.bsky.social · 27/01/2025

This is a hugely important paper particularly for policymakers on #ME #LongCovid Thanks to all who worked on it. Please #pwME pass it round. Let’s get this scientific evidence out 🔥

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Ror Preston @rorpreston.bsky.social · 27/01/2025

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Ror Preston @rorpreston.bsky.social · 26/01/2025

First batch of stock has arrived, online store coming soon! ✌️💙

Black caps with Cure ME/CFS in white on front

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María Richardson @diatoma.bsky.social · 25/01/2025

Anybody in the #ME tech/app field looking for an ME and #LongCovid informed (though not #pwME themselves ) full stack web developer to join the team? @rorpreston.bsky.social

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Ror Preston @rorpreston.bsky.social · 25/01/2025

Has anyone had any positive experiences with specialist clinicians or clinics for ME/CFS, Long Covid, POTS, Chronic Lyme or other IACCs? Please shout them out below! Want to make sure our Clinics database in CrunchME reflects community experience! 🩺 crunchme.notion.site/clinics

crunchme.notion.site

Specialist Clinics & Clinicians | Notion

Lead Contributor: Michael Alexander | Last Updated: 2024-11-21 | Made available under the Open Database License (ODbL)

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Ror Preston @rorpreston.bsky.social · 22/01/2025

We've updated the @crunchme.bsky.social scientific conferences & events table with so-far announced details of 2025 events 📅 So if you're wondering what events lie ahead, check it out! Also includes links to recording from the previous event where available crunchme.notion.site/conferences

crunchme.notion.site

Scientific Conferences & Events | Notion

Lead Contributor: Lisa Kava | Last Updated:2025-01-22 | Made available under the Open Database License (ODbL)

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Ror Preston @rorpreston.bsky.social · 18/01/2025

An overview of where clinical treatment trials are happening for Long Covid, ME/CFS and other IACCs - according to the @wecrunchme database 🌎 🥇 = USA 🥈 = Germany 🥉 = Canada & UK Imo international gov discussion on funding is critical to encourage smaller nations!

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Ror Preston @rorpreston.bsky.social · 15/01/2025

It's encouraging to see there has been a significant uptick in the number of biomarker & diagnostic projects for ME/CFS & Long COVID 📈🔬 crunchme.notion.site/biomarkers Note: year relates to publication date if available, initiation date otherwise. Please let us know if we're missing any! 🙏

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Ror Preston @rorpreston.bsky.social · 12/01/2025

Thanks to @mildtin.bsky.social, who I'm delighted to say has joined CrunchME as a volunteer contributor, our Biomarkers & Diagnostics Projects table has received a serious refresh 💅 We now have 29 projects listed in there, with 19 of them ongoing. Check it out 👇 crunchme.notion.site/biomarkers

crunchme.notion.site

Biomarker & Diagnostic Projects | Notion

Lead Contributor: Lisa Kava | Last Updated: 2025-01-10 | Made available under the Open Database License (ODbL)

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Ror Preston @rorpreston.bsky.social · 10/01/2025

One of our volunteer contributors at CrunchME, Fiona, has done a brilliant job refreshing our Politicians table after the latest UK election 💼 crunchme.notion.site/politicians If you know of any IACC supporters amongst politicians in your country not listed, please let us know! #MECFS #LongCovid

crunchme.notion.site

Politicians Interested in IACCs | Notion

Lead Contributor: Fiona | Last Updated: 2025-01-04 | Made available under the Open Database License (ODbL)

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Yann (ME/LC) @me-cfs.bsky.social · 07/01/2025

Really struggling to find doctors who understand very severe ME, understand that I cannot speak etc. Does anyone know of a doctor like this in Switzerland? If not possible Germany? Austria? France? @sgme.bsky.social

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Todd Davenport @sunsopeningband.bsky.social · 05/01/2025

Where I think it’s all headed for ME and ME-like diseases: mitochondrial transfer. Affected cell lines may receive donations from less affected ones. Treatments may focus on providing reinforcements for those poor, de-energized little beans. 🫘 translational-medicine.biomedcentral.com/articles/10....

translational-medicine.biomedcentral.com

Targeting mitochondrial transfer: a new horizon in cardiovascular disease treatment - Journal of Translational Medicine

Cardiovascular diseases (CVDs) are the leading cause of mortality among individuals with noncommunicable diseases worldwide. Obesity is associated with an increased risk of developing cardiovascular d...

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Ror Preston @rorpreston.bsky.social · 31/12/2024

I think this chart is a stark reminder, or informant to many outside our community, that the COVID pandemic *isn't just* about deaths and acute illness. The shadow COVID casts is long indeed 😮

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Ror Preston @rorpreston.bsky.social · 31/12/2024

Really looking forward to CrunchME @crunchme.bsky.social and #ThereForME collaborating in 2025 🤝 The #ThereForME team are a class act, and I think our data science & mapping work is sharpest in the context of supporting campaigning & fundraising 🔥

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Ror Preston @rorpreston.bsky.social · 28/12/2024

I think this chart really captures the extent to which we need to bend the curve upwards on IACC funding 📈 I call the gap between MS (an underfunded disease) and HIV/AIDS (a highly funded disease) the 'cone of attention' that ME/CFS, Long Covid etc need to push into. crunchme.org 🔗

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Ror Preston @rorpreston.bsky.social · 28/12/2024

Great to see people (Yann!) picking up on our new visualisation gallery! 📈 Wanna see more...? crunchme.org 🔗 #MECFS #LongCovid

crunchme.org

CrunchME

The evidence and insight base to crunch infection-associated chronic illnesses.

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Yann (ME/LC) @me-cfs.bsky.social · 25/12/2024

ME/CFS Publications have steadily increased for a while. Despite this, ME is still one of if not the most underfunded common disabling illness on earth. Source: @crunchme.bsky.social #MEAwarenessHour

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Ror Preston @rorpreston.bsky.social · 26/12/2024

Remarkable to see the lack of attention to MCAS (Mast Cell Activation Disorder) within the current context of Long Covid research funding 👀 Given quite a lot of pwLC on here seem to struggle with it - and it can cause rapid deteriorations - deserves more attention? crunchme.org 🔗 #LongCovid #MCAS

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Tom Kindlon @tomkindlon.bsky.social · 07/12/2024

Wearable Technology [Visible] in the Management of Complex #ChronicIllness: Preliminary Survey Results on Self-Reported Outcomes www.researchsquare.com/article/rs-5... "Of those with at least 30 days of data, 77% saw improvements in symptoms ..." #MEcfs #CFS #PwME #LongCovid #PASC #PwLC 1/

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Ror Preston @rorpreston.bsky.social · 07/12/2024

What an absolute legend 🔥 Thank you David, and also to your whole team at CoRE & Mt Sinai! #MECFS #LongCovid #ThereForME

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ThereForME @thereforme.bsky.social · 07/12/2024

David Putrino is #ThereForME! @putrinolab.bsky.social is a leading #LongCovid clinician and Director of the @mountsinainyc.bsky.social Center for Recovery From Complex Chronic Illnesses. His message: “Happy Holidays! We won’t stop fighting for pwME! Love David” #PatientSafety #pwME #pwLC

A pretend polaroid shows David Putrino posing for a photo holding a #ThereForME Christmas card.

The image on the card shows two presents, one labelled "patient safety", the other "research". The photo is labelled "7". The design is in the #ThereForME colours.

This second image displays David’s handwritten message. It reads: “Happy Holidays! We won’t stop fighting for pwME! Love David”

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Ror Preston @rorpreston.bsky.social · 06/12/2024

I want to share the intro to CrunchME's fundraising pitch with the community, as I think it most clearly communicates what we're doing and why! 💙 www.loom.com/share/9c5988... #MECFS #LongCovid #PAIS

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Ror Preston @rorpreston.bsky.social · 06/12/2024

Thanks so much for the kind words, and so glad it has helped you. I think no question for many, biometric-assisted pacing is a massive improvement on 'guesswork pacing' 🙌

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encephalogirl.bsky.social @encephalogirl.bsky.social · 06/12/2024

I’ve been using Visible since it first came out. I now use the paid version. It has fundamentally changed my life. Prior, I thought I was pacing properly, but continued to decline. With Visible, I learned quickly how poorly I was actually pacing.

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ThereForME @thereforme.bsky.social · 06/12/2024

Dec 6: Caroline Nokes, Conservative MP & Deputy Speaker of the House of Commons. Her message: “For everyone with ME and Long Covid- I wish you a very Happy Christmas and want you to know that you’re not forgotten. They are hideous conditions, we need more research & much better understanding.”

A pretend polaroid shows Caroline Nokes MP in her office posing for a photo holding a #ThereForME Christmas card.

The image on the card shows the dark blue Christmas tree, decorated with sparkling fairy lights, baubles and a star on the top, in a snowy landscape against a starry backdrop. The design is in the #ThereForME colours.

This second image displays Caroline’s handwritten message. It reads “For everyone with ME and Long Covid- I wish you a very Happy Christmas and want you to know that you’re not forgotten. They are hideous conditions, we need more research & much better understanding. Best wishes, Caroline Nokes MP, Deputy Speaker of the House of Commons”

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Ror Preston @rorpreston.bsky.social · 05/12/2024

Delighted to be a co-author on this 2nd paper with @putrinolab.bsky.social 🙌 Looking at Visible Armband effectiveness, on self-reported outcomes Significant benefits to energy mgmt, understanding of energy budget & some aspect of PEM More modest for improving daily & physical activities

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